WINTER 2016 MICHIGAN CHAPTER
MS CONNECTION NEWSLETTER Launched in 2010, The National MS Society’s groundbreaking $250 million No Opportunity Wasted (NOW) campaign has accelerated vital progress toward stopping MS in its tracks, restoring what has been lost and ending MS forever. Of the nearly $900 million invested in MS research by the Society since 1946, the NOW campaign fueled more than 25% of that total in just five years. Since the start of the NOW Campaign, the Society launched 779 new research projects including: • 5 commercial research partnerships aimed at overcoming barriers to commercial development to propel promising new therapies • 71 clinical trials • 132 projects testing rehabilitation and wellness approaches • 137 grants to train promising MS researchers Contributions to the NOW campaign have transformed the pace of MS research progress – accelerating breakthroughs that will change lives and end MS forever: • MS treatment options are rapidly increasing – five approved in just the last five years. • The MS treatment pipeline has expanded – there are now more potential treatments in trials than any other time in history. • The promise of myelin repair is now reality – three potential myelin repair treatments have entered trials in just the last five years. • Our understanding of the causes of MS has advanced – Over 100 genetic variants identified in just the last five years and several risk factors confirmed. We are now in the homestretch of this campaign having fueled a total of $235.6 million in research investments to date! Together, we must raise the necessary funds to successfully complete this historic achievement. You can ensure we reach our $250 million goal by December 31, 2015 by: • Making a NOW gift today • Sharing your story and the Society’s research impact • Asking others to give For more information, please visit nationalMSsociety.org/mig.
INSIDE 2 THIS ISSUE
WAYS TO GIVE: HEALING THROUGH HELPING OTHERS
6&7 12&13 15 PROGRAMS & SERVICES: UPCOMING EVENTS
ADVOCACY: KIDS DO GET MS
FUNDRAISING: 2016 EVENT DATES
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MS CONNECTION: WINTER 2016
WAYS TO GIVE
HEALING THROUGH HELPING OTHERS BY SR. K AR EN ZIELINSK I, OSF
For the last few years, I have been making Rice Krispies treats and giving them to others. I often mold these treats into seasonal shapes. For the Super Bowl, I make footballs. I also create candy corn shapes for Halloween, wreaths for the holidays and flowers for spring. My sister teases that my fixation with these sweet creations is an addiction and suggests that I need an intervention because I “can’t stop anytime I want to.” But she made me think: “Why am I doing this?” I think I make them as a way to remember others. Sometimes I give them to someone who is sick. Other times, I give them to co-workers or neighbors. It is a simple, spiritual activity for me. Focusing outside of ourselves can be healing. Facing an illness like multiple sclerosis brings its own challenges, such as getting to doctor’s appointments or managing medications. Even everyday tasks can seem difficult: getting up in the morning, paying bills and doing laundry. But we can all benefit from giving back, from thinking of others, from volunteering - even if we have health challenges. According to a study by the Corporation for National and Community Service, volunteers have higher functional ability, lower rates of depression and less incidence of heart disease.
HOMEMADE TREATS ARE A SWEET WAY TO GIVE TO OTHERS. Even something small will do. Volunteering for a non-profit organization by making phone calls or stuffing envelopes can be a great place to start. It does not have to be a huge task, but something that shifts our awareness and energy to other people or causes. People with MS can also do good by acknowledging their support partners or healthcare professionals. A simple phone call, a hug, or just saying, “Thanks, I appreciate all you do for me,” goes a long way. Everyone needs to be affirmed and loved. The words of poet Emily Dickinson are motivating to me: “If I can stop one heart from breaking, I shall not die in vain.” n Karen J. Zielinski, OSF, a member of the Sisters of St. Francis of Sylvania, Ohio, has lived with MS since 1975. Her recent book, Hope and Help for Living with Illness (Franciscan Media), discusses chronic disease and coping strategies. Originally published on MSconnection.org/blog. Call the National MS Society at 1-800-344-4867 for volunteer opportunities near you.
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SEEKING NOMINATIONS FOR MS LEADERSHIP CLASS OF 2016 Would you like to increase awareness about MS? Do you enjoy networking with other business professionals? Do you want to learn more about the techniques of successful and effective fundraising? If you answered yes to any of these questions, we would love to meet you! The MS Leadership Class partners business men and women in Southeast Michigan with the National Multiple Sclerosis Society in the movement to create a world free of MS. Since its inception in 2011, the MS Leadership Class program has raised over $159,000 for the National MS Society, Michigan Chapter. To date, ninety-six business professionals have participated in the Leadership Program - 96 more people educated about multiple sclerosis, educating others, increasing awareness and staying connected, because every connection counts. The MS Leadership Class includes learning and networking opportunities and features a kick-off reception, award ceremony, a tour of the MS Research Center at Wayne State University and many other opportunities to connect with like-minded professionals. This is a 12-week program (February – May) and class members are asked to raise a minimum of $1,500 for MS research, programs and services. If you would like to learn more about the program, please contact Cheryl Rothe at 248-936-0360 or Cheryl.Rothe@nmss.org.
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AWARENESS
ANNUAL MEETING ANQUNETTE JAMISON AND MATT “MOJO” LERSCH – EMCEES AT THE 2015 ANNUAL MEETING.
The Michigan Chapter’s Annual Meeting & Recognition Breakfast will be held Saturday, March 5 from 8:30 a.m. to 12:30 p.m. at the Ukrainian Cultural Center, 26601 Ryan Road, Warren, MI 48091. At this meeting, we will recognize key volunteers, top individual fundraisers and top fundraising teams for their outstanding contributions in 2015. All are invited to join us for this inspirational and informative morning. Visit nationalMSsociety.org/mig in early January to register. The Board of Trustees of the National Multiple Sclerosis Society, Michigan Chapter is elected each year during the meeting. If you or someone you know is interested in serving on the Board, please contact Elana Sullivan, Michigan Chapter President at 248-351-2190 or email Elana.Sullivan@nmss.org prior to Friday, Feb. 26, 2016.
March 7-13, 2016 Each year, people across the country who want to do something about multiple sclerosis – people just like you – unite during MS Awareness Week to share their stories, create awareness about the disease and change the world for everyone affected by MS. Big or small, every action matters and every connection counts. It’s up to us to do something about MS. And MS Awareness Week is the perfect time to take the next step by sharing your story and inspiring others. What will you do for MS Awareness Week? Get creative and have fun while educating people about MS. Have a connection at your local bakery? See if they will make orange cupcakes during MS Awareness Week. Decorate your workspace orange. Decorate your vehicle orange. The opportunities are endless and we need your assistance in making this week a huge success! Please share your ideas and pictures with us – we would love to post them on our Facebook page. If you have questions, please e-mail Cheryl.Rothe@nmss.org. Join us on Facebook at facebook.com/nmssmi.
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LIVING WITH MS
STORIES OF A FATHER BY THER ESA MOOR E
Fraser Robinson III never let multiple sclerosis get in the way of living a full and meaningful life. That attitude is part of the legacy he left to his two children, ESPN broadcaster Craig Robinson and First Lady Michelle Obama. “People ask me all the time, ‘What did your parents do?’ and they look at my sister Michelle, and they look at me. I tell them our parents never held us back. They never let MS hold us back.” Robinson told this story to 700 guests at a fundraising luncheon for the National MS Society that raised $350,000 for research, programs and services for people affected by MS. The elder Robinson was diagnosed with MS when Craig and Michelle were very young. Although their father walked with a pronounced limp that progressed over the years, they never thought of him as being anything less than fully able to work, play and enjoy life. Regaling the crowd with anecdotes of growing up with Michelle - “a health nut, even back then” - Robinson recalled that his dad never missed more than a few days working the swing shift at the Chicago Water Department and was always there as
CRAIG AND MICHELLE WITH THEIR PARENTS, FRASER AND MARIAN a steady presence in his family’s lives. “I do not know where I would be if I hadn’t seen my dad battle this disease with such courage and with such grace. I don’t know who I would be,” he said. “In a funny way, MS has had a profoundly positive effect on my life.” n Theresa Moore is a regular volunteer for the Society. Originally published in the Greater Northwest Chapter’s MS Connection newsletter. The National MS Society’s Family Matters group at MSconnection.org is an online community for everyone - children, brothers, sisters, parents or other relatives of people with MS who are affected by life with the disease. Visit nationalMSsociety.org and search for “Family Matters,” or call 1-800-344-4867, to access videos, care partners guides, and a range of materials for children and teenagers affected by MS.
6 PROGRAMS & SERVICES
UPCOMING EVENTS SAVE THE DATE
Family Getaway will be held in Frankenmuth on Saturday, April 2, 2016. This program will offer informative sessions, food, fun, and connections for the whole family. Watch for details or go to nationalMSsociety.org/mig after Feb. 22, 2016. African Americans with MS Conference Watch your mail for an announcement about an African Americans with MS Conference coming up in Detroit on Saturday, March 12, 2016. You won’t want to miss this unique program. Everyday Matters: Living Your Best Life with Multiple Sclerosis will be held in Southfield on six Thursdays from April 7 to May 12, 2016. Increase your knowledge of the principles of positive psychology, gain an understanding how these principles can be used as a strategy for living with MS, and identify additional resources for support and connection. Put positive psychology to work in your life! Watch for details or go to nationalMSsociety.org/mig after Feb. 29, 2016. MS Wellness Conference April 2016 University of Michigan – Flint Flint Registration will begin in March
MS CONNECTION: WINTER 2016
Gateway to Wellness-Grand Rapids April-May 2016 Grand Valley State University Grand Rapids Requests for applications will begin in March U.P. Spring Conference Saturday, May 21, 2016 Bay Area College Escanaba Registration will begin in April
SCHOLARSHIP PROGRAM OPEN FOR ENROLLMENT The National Multiple Sclerosis Society Scholarship Program is for college students of any age who have MS or have a parent with MS. Interested persons may apply to the program during any year of undergraduate study. The enrollment period deadline for the scholarship program is Jan. 15, 2016. The application is available online only. You may find general information about the program and answers to frequently asked questions on our website at nationalMSsociety.org and search scholarship program information.
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YOU MAY BE ABLE TO FILE YOUR TAXES FOR FREE
Michigan has a variety of free tax preparation services available to assist you with your taxes. For a list of free tax sites, go to michiganeic.org/freetaxprep. You can also call 2-1-1 (1-800-552-1183 if 2-1-1 is unavailable in your area) for help locating the free tax site nearest you. If you would like to prepare your taxes yourself, you can use the IRS’ Free File program. If your Adjusted Gross Income is less than $57,000, you can access FREE webbased software that will help you do your federal taxes for FREE. You may be able to also do your state taxes. Taxes are easy to do with Free File and you do not need to be a computer expert. Answer a few questions and your tax returns will be prepared and you will get help e-filing. To learn more or to get started with IRS Free File, go to irs.gov/uac/Free-File:-DoYour-Federal-Taxes-for-Free. You can get information at any time, but you cannot prepare your taxes until after Jan. 30, 2016.
HEALTH INSURANCE OPTIONS AND REQUIREMENTS
Fifteen insurance carriers are offering individual coverage plans for sale in the Michigan health insurance Marketplace during the current open enrollment period from Nov. 1, 2015 to Jan. 31, 2016. Each plan offers coverage options described with a “metal” name (gold, silver, bronze) that give you choices for the monthly premium, copays and the deductible you pay. Go to healthcare.gov to explore your coverage
options and learn if you qualify for a premium subsidy. In 2015, 88 percent of the people who purchased health insurance through the Marketplace qualified for a subsidy. Most people must have health coverage or pay a fee known as the individual shared responsibility payment. In 2016, the fee is 2.5 percent of your income or $695 per person, whichever is higher. You can get an exemption in certain cases. For information about exemptions and where to get enrollment assistance near you in person or via phone, go to enrollmichigan.com.
MICHIGAN CHAPTER LEGAL CLINIC
Do you have a legal question? Your legal question can be on any issue relative to your disability, such as job discrimination, social security benefits, financial planning or other related topic. Please call 1-800-344-4867, option 1 for further instructions. You must call prior to 12 p.m. the Thursday before the Legal Clinic, to set up an appointment. The attorney will call clients who have registered in advance for the service. Our Legal Clinic is held the first Saturday of every even numbered month. Our volunteer attorney returns calls between 10 a.m. and 2 p.m. Please be available during that time! Eligibility requirements: 1) You must be a member of the Michigan Chapter. 2) You must have a diagnosis of MS. 3) Legal issue must be related to MS. Upcoming Legal clinic dates: Saturday December, 5, 2015 Saturday February 6, 2016
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RESEARCH
HAVE A VOICE IN MS RESEARCH Today, there are more options than ever before for people with multiple sclerosis to help drive MS research. They can choose to participate in clinical trials, donate DNA through blood samples or complete health surveys. No matter where they live, what their background is or what stage of the disease they are in, people with MS are at the heart of MS research. Here are some of the ways you can make your voice count.
PARTICIPATE IN CLINICAL TRIALS From testing a potential new therapy for MS to trying an exercise program to help manage symptoms of fatigue or spasticity, people with MS who participate in clinical trials make it possible to bring new medications and symptom-management strategies from the lab to their doctor’s office.
WHO KNOWS MORE ABOUT MS AND ITS DIVERSE IMPACTS ON LIFE THAN PEOPLE WHO LIVE WITH THIS DISEASE EVERY DAY?
“The willingness of people with MS to participate in research studies and clinical trials is vital to understanding the complexities of the disease and to developing better treatments,” says Timothy Coetzee, PhD, Chief Advocacy, Services and Research Officer at the National MS Society. “They are the experts - who else knows more about MS and its diverse impacts on life than people who live with this disease every day?” In fact, researchers are increasingly looking at “patient-reported outcomes,” gathering information directly from individuals participating in studies to better capture how a treatment makes people feel. For more information on how to participate in current clinical trials, visit nationalMSsociety.org/clinicaltrials or search clinicaltrials.gov for ongoing MS research.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
NARCOMS: DATA THAT COUNTS Participating in the North American Research Committee on Multiple Sclerosis, or NARCOMS, is another way people with MS can express their willingness to participate in MS research. Since its founding in 1993, more than 37,500 people with MS across the globe have joined its registry and more than 80 papers with research results utilizing data provided by participants have been published. Anyone with a diagnosis of MS can participate in NARCOMS. Visit narcoms.org to learn more.
iConquerMS™: ASK THOSE WITH MS “If you want to know what it is like to live with MS, or how different lifestyle choices impact a person’s quality of life or what questions people with MS are most interested in exploring, you ask those living with the disease,” says Lisa Emrich, a Washington, DC-based writer and blogger who was diagnosed with MS in 2005. Emrich is one of the first to sign up to participate in a new initiative, iConquerMS™, a unique patient-centered data collection system that allows people with MS to safely and securely share their health information and ideas for MS research with MS researchers nationwide.
9 IF YOU WANT TO KNOW WHAT IT IS LIKE TO LIVE WITH MS, YOU ASK THOSE LIVING WITH THE DISEASE. Through its online portal at iConquerMS.org, people with MS can share their health information and ideas about research. MS researchers can then use this shared data to find patterns in the disease that may not be visible otherwise, opening the potential to identify causes of MS, determine who will respond best to what therapy and find new improved treatments for the disease. iConquerMS™ is focused on research topics driven by people with MS and governed by people with MS at every step of the process. As part of a larger nationwide research network called PCORnet, iConquerMS™ contributes health data to many research efforts, while also providing MS researchers access to data from millions of people across the country. n To learn more about the many ways you can help drive MS research forward, visit nationalMSsociety.org/Research/ Participate-in-Research-Studies or call us at 1-800-344-4867.
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MS CONNECTION: WINTER 2016
FUNDRAISING
GM CAR AUCTION Our friends at General Motors donated a 2015 Chevrolet Camaro Z/28 that was auctioned off at the Barrett Jackson Collector Car Auction in Las Vegas in September to benefit the National MS Society, Michigan Chapter. As 2015 marks the final model year for Camaro’s fifth generation, this was no ordinary car. It was the very last of the fifth generations built and it sold at auction for $135,000!
The Do It Yourself (DIY) platform allows you to use your talents and interests to raise awareness and funds for the National Multiple Sclerosis Society! Host a fundraising event, start a grassroots fundraising campaign with email or take on a personal challenge of your choice. The opportunities are endless! One example is Team ALIgators from the Grand Haven Walk who host an annual day of scrapbooking, stamping, crafting, eating and laughing. The event this year will take place on Jan. 16, 2016 from 9 a.m. to 9 p.m. The event is being held at the Mason County Reformed Church, Scottville (near Ludington). The cost is $35 and includes
three meals, snacks, door prizes and a few surprises. To sign up or for more information, contact Ada Weier at 231-757-9125 or Kathy Gallagher at 231-233-2294. If you are interested in hosting your own DIY event please contact Tammy Willis, VP of Special Events by phone at 517-281-1308 or email Tammy.Willis@nmss.org.
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PROGRAMS AND SERVICES
FINANCIAL ASSISTANCE Our 2016 fiscal year is open and accepting financial assistance applications. This program offers assistance in a wide variety of areas including, but not limited to: assistive technology such as computers, auto modifications including hand controls and vehicle lifts, incontinence supplies, purchase and repair of medical equipment, accessible medical transportation and limited assistance for past due utilities and rent/mortgage. If you have received assistance in the past, you may be eligible again. A new application will need to be completed. For more information or to request an application, call 1-800-344-4867, option 1. Our website has details on the financial assistance program at nationalMSsociety.org/mig.
DID YOU KNOW? The Michigan Chapter also provides assistance for physical activity classes that may help you manage your MS such as Aquatics, Yoga, and Tai Chi. Speak with an MS Navigator at 1-800-344-4867, option 1, for more information or to request a financial assistance application.
CHRISTOPHER & DANA REEVE FOUNDATION AWARD The National MS Society, Michigan Chapter is excited to announce that a grant was received from the Christopher and Dana Reeve Foundation! This grant has been awarded to the chapter in order to provide twenty Physical Activity Scholarships to qualifying individuals. These limited openings are available to individuals who have difficulty moving their arms and/ or legs and are looking to help manage their MS symptoms through exercise. Special consideration will be given to those in rural areas. To find out more about this exciting opportunity please contact an MS Navigator at 1-800-344-4867, option 1.
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MS CONNECTION: WINTER 2016
ADVOCACY
KIDS DO GET MS BY PATTI TAYLOR
Last year, my husband and I went to Capitol Hill in Washington, D.C., for the National Multiple Sclerosis Society’s Congressional Briefing on Pediatric MS. We spoke with more than 30 congressional members and staff who had gathered together to learn more about a topic close to our hearts: pediatric MS. Together with the Director of Partners Pediatric MS Center and Associate Professor of Neurology at Harvard Medical School, Dr. Tanuja Chitnis, we helped shed light on a diagnosis that affects an estimated 8,000 to 10,000 children and adolescents, including our son Sean. Sean’s symptoms started when he was just 7 years old. He was dizzy, off balance, and had slurred speech. We took him to the emergency room, where – during the course of a weeklong stay in the intensive care unit – doctors performed a battery of tests and a diagnosis of acute disseminated encephalomyelitis (ADEM) was made. I remember reading about ADEM and seeing a mention of MS, but I didn’t think twice about it since we had heard that “kids don’t get MS.”
DIAGNOSIS CONFIRMED After that experience, Sean was symptomfree for three years until we once again
PATTY TAYLOR AND HER SON, SEAN found ourselves at the hospital where an MRI showed lesions on his brain consistent with MS. A spinal tap confirmed the diagnosis. We were devastated. As a neonatal intensive care nurse, I knew very little about MS. Thankfully, and we were able to meet our neurologist, Dr. Amy Waldman at the Children’s Hospital of Philadelphia. Unsure how long Sean’s relapse might last, we began to consider what therapies were available. Since the Food & Drug Administration (FDA) has not approved any of the disease-modifying therapies for MS for use with children, neurologists use them off-label. In addition, the four medications approved at the time for adults with MS were all injectable–not exactly kid-friendly.
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PEDIATRIC MS IS COMING TO LIGHT, WHETHER AT MS RESEARCH CONFERENCES IN THE HALLS OF CONGRESS OR AT BIKE MS EVENTS. Once we chose a therapy, it was very difficult to tell Sean that he would be given a shot every week. We decided to do something special on injection day, like watch a movie or make Sean’s favorite dinner. He was always such a champ; he never complained. I gave the injections to him until his senior year in high school when he began using a self-injector to prepare for college. Sean’s proud that he has only missed one week of medication over the last nine years. I think in his mind, as long as he takes his medicine, he will not have an exacerbation and end up back in the hospital. So far so good—we hope that continues to be true for Sean.
COMING TO LIGHT From the start of Sean’s diagnosis we began to attend National MS Society events. We were anxious to meet other parents and kids who truly understood our situation. We needed to know that we were not alone. We heard one thing over and over from parents: “My doctor said that kids don’t get MS.” My hope is to squash that myth so that more money, more grants and more pediatric centers for MS can exist across the country.
Sean is a true success story and we could not be prouder of him. He has not been hospitalized since he started his diseasemodifying therapy and his MRIs have been stable over the last five years. He does well in school, is an avid runner, and just started his sophomore year of college with a focus on finance and accounting. We’ve been involved in the MS City to Shore Bike MS event since his diagnosis and have raised $80,000 to date. We will ride until a cure is found – we just completed our ninth ride with Team Taylor. Sean even designed our team jerseys! Pediatric MS is coming to light, whether at MS research conferences, in the halls of Congress or at Bike MS events. Contact your members of Congress to urge support for MS research funding— including pediatric MS! For more information on becoming an MS activist, visit nationalMSsociety.org/advocacy. n Patty Taylor’s son, Sean, was off icially diagnosed with pediatric MS in 2010. The MS movement has become a family affair for the New Jersey family, who volunteer for the Society in many ways. Originally published on MSconnection.org/blog.
Learn more about pediatric MS at nationalMSsociety.org/pediatricMS.
14 SPOTLIGHT ON SELF-HELP GROUPS Self-help groups bring people together who share common life experiences for support, education and mutual aid. Benefits of participating in a self-help group include: Learning new information and strategies for confronting problems n Finding support from others n The opportunity to help others n Feeling empowered and more selfconfident in coping with challenges n
National MS Society self-help groups may focus on support, advocacy, education or be more social in nature. Some groups also serve specific populations, such as young adults, parents with MS, carepartners or AfricanAmericans. Members of self-help groups share a belief that positive personal change happens through individual efforts with the support of others. There are 35 self-help groups throughout the state of Michigan. These groups are possible due to the hard work and dedication of 56 trained, volunteer leaders! These leaders put in numerous hours of work contacting group members, obtaining speakers, planning meetings and keeping updated on MS Society programs and services. If you are part of a support group, please remember to thank your leader often!
MS CONNECTION: WINTER 2016
If you are interested in starting a group and becoming a leader, please contact the MS Society. You will be provided an application packet and handbook to review. All new leaders will participate in eight hours of tele-training conducted by our home office. Potential leaders will have the opportunity to connect with others leaders nationwide and learn skills that aid in becoming a successful leader! To find a group in your area or to talk to someone about establishing a group, contact an MS Navigator at 1-800-344-4867.
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2016 EVENT DATES West Michigan – June 11-12 Great Lakes Breakaway Mid Michigan – July 16-17 Ride 2015 Fall Breakaway – Sept. 10 Bavarian Breakaway – Sept. 24-25
Register today for any Bike MS ride and save 16% with discount code HAPPY2016
August 6 - Location TBD
Midland – April 30 Detroit – May 1 Kalamazoo – May 7 Frankenmuth – May 14 Michigan Chapter St. Clair – May 14 Walk 2015 Wyandotte – May 21 Grand Rapids – May 21 Lansing – May 21 Dexter – June 25 Rochester – June 25 Traverse City – June 25 Grand Haven – September 10 Milford – September 11 Marquette – September 11 Lapeer County (formerly Imlay City) – September 17
GET CONNECTED
NATIONAL MULTIPLE SCLEROSIS SOCIETY
Michigan Chapter nationalMSsociety.org/mi info@mig.nmss.org
Michigan Chapter 21311 Civic Center Drive • Southfield, MI 48076 • 1-800-344-4867 Chairman: Michael Brady Chapter President: Elana Sullivan Editors: Sarah Borst & Liz Trapp Design: Graphinity, Inc.
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© 2016 National Multiple Sclerosis Society, Michigan Chapter
Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
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